Kate’s Story

KATE’S STORY

Kate

I had a wonderful birth, no drugs, no gas and air, no terrible pain. I felt pretty amazing as I held my little boy against me. I can even remember his newborn smell like wet rust. I said, “Hello” and scanned over him as every mother does. I noticed his differences before anyone else – 6 toes, 6 fingers, short arms. At this point, I even felt myself rein in my emotions…..Should I get attached to this little baby? Is he viable? Is he all there? As he stared at me with dark violet eyes, I knew he was, but I wanted to hear it from the paediatricians who checked him over that night – 3 in total and no diagnosis. No one mentioned dwarfism, but I knew from the length of his limbs that he was a dwarf, a little person. You never really know your true feelings about human conditions until you are faced with them so personally. I think I must have had a reasonably positive view of dwarfism before I had Angus, because although it was a shock, I was surprised at how little it bothered me.

We got his diagnosis the next morning – Ellis-van Creveld syndrome (EvC). Eh?? Wassat then? I felt at a bit of a loss away from my usual source of info, the Internet, and had to rely on the docs. The biggest blow was learning he had a heart defect after a scan at Yorkhill when he was 2 days old. I sobbed uncontrollably when I got back to the car. Dwarfism seemed so unimportant in comparison. “Take him home. Treat him like any other baby. The heart surgery will wait until he’s a year old.” So, we went home, and we treated him like any other baby. He was a completely adorable, alert, and easy baby. We had 3 wonderful weeks at home before his health started to fail. He went into acute heart failure, and we watched him fighting for his life in A&E at Yorkhill before being paralysed, sedated and put on a ventilator.

5 months in PICU, 12 months on the long-term vent ward, 2 heart ops, tracheostomy and Nissen fundoplication later, we got him home. During this time, I sought out knowledge obsessively. I searched the Internet for articles, books, people tall and small, developed a website for parents of kids with EvC, started a message board and got in touch with experts in EvC around the world. It helped me feel less helpless at the time. I watched any program I could find about dwarfism. I wanted to know how people with dwarfism viewed themselves. I wanted to know how society as a whole viewed little people. I challenged my own views of little people. As disabilities go, it didn’t seem too bad to me. OK, Angus was going to be short, but his brain worked and he had full control of all his limbs. He could become a productive member of society and be fully independent – if he survived. The latter matter was our most pressing concern at the time.

Once we’d got to grips with his home care, we started going out more, and I felt that we really had to meet people who either had restricted growth, or who had children affected by it. I wanted Angus to know people like him as he grew up. I knew that I wasn’t going to have a clue about some of the things he would experience as he grew up. Sure, I could empathise with a bit of imagination, but there’s no way I could know what it’s like to look so clearly and unavoidably different wherever I go. One of my online acquaintances had said that he didn’t like seeing other people like him because he didn’t picture himself looking achondroplastic. It was always a shock to his system to see someone walk that way, stand that way, and realise that he did exactly the same. I think it was this most of all that made me determined for Angus to be familiar with other small people from early on so that it was never a shock looking in the mirror. I wanted him to have friends and positive older role models so that he would be happy in his own skin, so that he wouldn’t feel negative about being small. I love him the way he is, but hey, I’m only his mum and you know how little that counts for anything as your kids get older!

I found out that the RGA was having their first Scottish get together at the Campanile Hotel. I got in touch with Jackie Millan and she phoned me to give me lots of details. I decided to go along to the first night before the main event on Saturday because I needed to dip a toe in the water. I was really nervous about going. I didn’t know anyone really and I had a few concerns, which seem silly now. I’ll list them anyway because I’m sure that I’m not the only average height parent who felt this way prior to a small person gig.

I am quite tall and very clumsy. I had this fear of stepping backwards and falling over someone and hurting them. I had visions of myself landing on my bum on the floor with some poor small person squashed under my legs while surrounded by stares from disapproving faces.

I am not very PC and tend to suffer from “Foot in mouth” disease. I was really worried that I was going to say the wrong thing and embarrass myself utterly by offending or hurting someone’s feelings.

I was worried that I was going to meet a small person with a very large chip on their shoulder who would take offence to everything I did and said (OK, a bit of a variation on the theme above, but even worse!).

Someone with EvC had told me how he had been shunned at a Little People of America meet because he didn’t have achondroplasia, and was taller than usual for someone with restricted growth. I had visions of being told that we shouldn’t be there because Angus was the wrong sort of little person…..how ridiculous!!

I steeled myself to go because my kids’ wellbeing is the most important thing in my life. I was prepared to suffer any embarrassment or difficulty for both of them. Both of them? Well, I wanted my average height daughter to be familiar with small people and to have friends who knew what SHE was going through too. (Oh yeah, one of my other worries was that she was going to stare lots, point and say very inappropriate things. The little chat we had before going – “There are lots of different types of people who are all different shapes and sizes. Learn to deal with it….” – must have worked because she was fine.) So, we went along. We were greeted by Jackie, Ronnie, and Arthur, who were so warm and genuine; I deflated pretty instantly. Angus was still fairly unstable at that point so I was stuck in a chair with him on my lap for most of the evening, but people were kind and came to talk to me rather than me having to get up and mingle. My daughter soon overcame her shyness and was running about the foyer with kids of different ages and sizes, squealing and laughing, in a very short space of time. It was a very reassuring sight, and was one of the main reasons I started this journey. We met another family who had a child with EvC, the following night. Their son will be a great role model for Angus as he gets older – he does very well in the Dwarf Athletic Association events and is extremely active. I thought it was really lovely of him to chat to us and to Angus. I was struck by how relaxed and socially confident most of the teenagers were. They were all sizes – it didn’t matter. We made friends with Kate O’Gorman (Vice-chair Short Stature Scotland) and her family – a lifelong friendship I’m sure. Our kids played together that night, and have done at numerous meets, afternoons, Sunday lunches and birthdays since.

We have been to other events since. We even made it down to an RGA convention in Crewe last year. Watching gaggles of teenagers arriving and meeting each other enthusiastically in the foyer, taking pictures, swapping phone numbers was very reassuring for me. We all want our kids to have successful friendships, and closer relationships. It wasn’t hard to see that both of these could start at events like these. Before the disco they were all done up to the nines, so happy and alive and excited. I want that for my son. Yes, I know he can have that in the “normal” world, and hopefully he will, but I want to give him every chance, every opportunity to have a happy, fulfilled and positive life. I want him and his sister to have friends of all sizes who understand what they are going through at different stages, and to have fun. I want to share my experiences and hopefully help other people by doing so too.

As a family, we have all benefitted from meeting other families affected by restricted growth conditions – mainly because we DO have fun, and we’ve met interesting people and made great friends. We get support when we need it and give support in return when our friends need it. I know that our friends will ease the difficulties of the coming years, and that the meets will provide a safe and welcome respite from those difficulties. I am so glad, so grateful that we have that. I know that Short Stature Scotland will be able to provide many new families with the same support – you just need to take a deep breath and jump right in!

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